Four years -- 80% of my goal, at least

Connected with my West Coast family of two sisters, a brother and niece and nephews galore;

Moved from Florida to New York for a better job;

Made new friends;

Educated people I'd never met, and hopefully saved a couple of lives;

Met people I never would have under different circumstances; and

Had some downers, too, such as losing my mother and several aunts; lost friends to cancer; found out I lost a brother a year before I met my family in California; lost one son-in-law to divorce; and had far more medical visits than any one person should have in a lifetime.

Still, as I've said during the past four years, it sure beats the alternative. As in not being around during the past four years. And that nearly happened.

It was about this time in 2007 that I agreed to see my doctor, John Pfeiffer in Celebration, Fla. I'd been distracted by an apparently very successful diet and my mother's illness, and put off seeing the doc until I was persuaded to get a checkup.

That's what my esophagus looked like when it was sick.

﻿

I was having difficulties swallowing and often spit up what I did consume. Weight loss was another concern. While I was dieting, I was losing weight faster than expected. Together things started to make sense.

It was the start of this disaster known as cancer of the esophagus -- a disease that nearly killed me. It claims about 88 percent of its victims, data show. Let's catch up.

I guess I've been the lucky one. In just the past few weeks, I lost a friend to this ailment and made a new acquaintance who is coping with it at a rather advanced age. Lucky. Depends on your definition. If surviving is luck, then so far I'm pretty damned lucky. But acquiring it in the first place was anything but luck.

Rather, it took years of hard work and practice. Overeating. Gaining weight. Spicy foods. It was the triple crown needed to acquire Barrett's esophagus, a pre-cancerous condition in which the lining of the organ alters to cope with the poor dietary choices. My hiatial hernia didn't hurt the cause either.

So with luck, or the lack thereof, it's been four years since I saw Dr. Pfeiffer, who said I most likely had to have the sphincter of my esophagus dilated. He referred me to Dr. Phillip Styne for an endoscopic exam. I made the appointment and underwent the endoscopy.

I knew something was wrong as soon as I awakened about 20 minutes after the five-minute procedure was supposed to end. "There was some swelling. You may need surgery," Dr. Styne told me when I woke up. He'd taken biopsies of my lower esophagus, where this swelling was really a cancerous mass.

That was a Thursday and I wasn't going to hear back until the upcoming Monday. The weekend really sucked.

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My Port after it was removed.

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Monday, Dr. Styne called to say he'd made contact with Dr. David Diamond and Dr. Lee Zehngebot, a radio oncologist and medical oncologist, respectively. Dr. Z was no-holds-barred. He told me this was not good, that I was in for a really crappy few months, at the least.

﻿

The prediction was not incorrect.﻿

Nutren 1.5. The breakfast of champions, if champions have

no taste buds and can't eat anything else. Anything. Else.

﻿

A "port" was implanted in my chest and to my carotid artery; a "g tube" was implanted in my belly so I could consume liquid nutrition (mmm, Nutren) when the radiation was expected to swell my esophagus and I couldn't swallow; I was tattooed and set up for my radiation treatment; and began seven weeks of misery: rads five mornings a week and chemo 24/7 pumped into my port, plus three half-day infusions of chemicals designed to kill my cancer.

All the while, I tried to eat as much as I could even as I was losing weight. We went to TooJays and Outback as often as possible to reward me for putting up with the crap and to fatten me up, so to speak.

A month after the chemo and rads ended, I was tested out to see if I was ready for surgery. A PET scan showed my cancer may have spread to a lymph node in my chest and to my liver. Such a development would rule me out of having surgery because it would have meant my cancer had spread and there wasn't much hope for me. Biopsies of my liver and the hylar node found the so-called "hot spots" were just residuals from my radiation. Basically, they cooked my liver a bit.

A laser is used to align my tattoos to the proper position

for radiation treatments.

﻿

So within months of discovering I was being attacked from the inside by cancer of the esophagus, the tumor appeared to have been defeated and the next step was surgery to remove the slain tumor and most of my esophagus, which would be re-created by skilled surgeon Dr. Joe Boyer in Orlando, who had to slice and dice my stomach to mimic my esophagus and still work as a stomach.

My new organ is called a neo-esophagus.

OK, that was then. Since, the road to recovery has been bumpy. Bumpy for my body and bumpier, still, for friends and family who have had to put up with what's left of me.
﻿

That's what my belly looked like after

surgery. You don't want this to happen

to you. Trust me.

﻿Along the way, mainly through this blog, I've met some amazing people. A few have gone through this. Some know others who did. And a few are ongoing patients and newcomers to the torture wheel.

For example, just a few weeks ago I received an email from a woman in Georgia about her father. Veleta Floren told me all about her dad, Jack Holley, who was diagnosed in June. He's had a rough go and is still consuming just the wonderful liquid diet I was provided called Nutren 1.4 (artificially flavored vanilla for me, see post at http://cancervivor.blogspot.com/2007/10/is-it-soup-yet.html). But the thin tunnel down his esophagus is opening and he can swallow a minimal amount of liquids. You can read about Jack at http://www.caringbridge.org/visit/jackholley.

There were others, as well. Including friends and family. Friends like Jim Solomons, an amazing and brave man who I met through work; he was a spokesman for the Orange County Sheriff's Office and I was an editor at the Orlando Sentinel. He learned about my cancer after his own diagnosis, when a mutual friend, Bianca Prieto, a Sentinel reporter, told us both about each other's plights.

Jim passed away a few weeks ago after his cancer re-appeared a few months ago by attacking his neo-esophagus and liver. He put up a hell of a fight, something he really didn't want to do. He stuck it out and is one of the bravest men I've known.

I've also done some more research. While cancer of the esophagus is continuing its march of death, the survival rate isn't really improving through advances in treatments. Docs now do the surgery that kept me hospitalized for weeks laproscopically. The length of hospital stays is down and the chemo therapies are being refined.

Yet, last year there were 16,640 new cases of esophageal cancer and about 14, 500 deaths. Thus, the survivability rate isn't very high, based on those numbers. Just 12-13 percent. Officially, the five-year relative survivability rate for localized staged cancer of the esophagus is 37 percent, and the relative rate for all stages is 17 percent.

If you're affected by this disease, there also are numerous trials of chemo and radiation therapies going on right now. You can go to this link and find out about them.

Try not to be among those who acquires the disease. Trust me, it sucks. Americans have experienced a rapid growth of incidence in the disease. Our dietary habits have huge role. And by huge, I mean filling our bellies. We do that with all kinds of crap and then wonder why we get heartburn. Greasy and fatty foods are the behind the growth of our large rears that are, well, behind us. They lead to the heartburn that leads to the Barrett's esophagus that leads to cancer. Sort of like the neck bone's connected to the back bone, etc.

If you've been eating like this, think about it and change your habits. You may also experience some signs that you are developing problems, and if you do please see a gastroenterologist. For examplie, heartburn and acid reflux lead to esophageal damage. Your heart isn't burning. Your lower esophagus is. It's literally being digested by your stomach fluids, and it reacts by adding, over time, scar tissue and then protective cells to block the acid. But these mutations, called Barrett's esophagus, are pre-cancer cells and without treatment will result in cancer. PPIs, or proton-pump inhibitors, which help keep your stomach from creating acid, are drugs that can protect you. They're meds like Prilosec, Kapidex, AciPhex and others. They work. See your doc.

So unless you really want years of horror stories to tell friends, family and children, or worse, I encourage you to see a gastroenterologist and take care of yourself.

If you want a scared-straight type of experience, go to this link, start from the bottom and work your way back up to here. My journey might just keep you from taking the same path.

Newsman Keith Kohn, husband, dad of six, cousin and nephew to many and former night editor at the Orlando Sentinel who's now at Newsday, chronicles his journey from diagnosis with esophageal cancer through his treatments. He offers insights, tips and anecdotes to help others beginning a similar path. Feel free to submit helpful hints, clarifications and corrections with the goal of helping others.

Disclaimer

Please remember that I'm not a doctor and any advice given from me or those who write me are not intended to replace your doctor's directions. They are tips to use -- or to not use -- as you see fit and judge for yourself. Please do so wisely.

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Tips mentioned in this blog

Avoid drinks with a lot of electrolytes, such as GatorAde and the like. I can't swear the GatorAde I've been drinking caused my urinary tract infections, but they coincidentally appeared within a day of my drinking the popular sports drink. Might just be how it affects me, but might be how it interacts with chemo.

Keep a box of alcohol pads nearby. When you're nauseous, the smell of alcohol halts the nausea.

Don't stop being you. Allow yourself to be angry and upset, but also allow yourself twice as much to be happy and positive and encouraged. Don't feel sorry for yourself and don't allow people to feel sorry for you. And do not, under any circumstances, allow toxic, negative people to cloud your mind or your space with their negativity.

Allow yourself to get angry, upset, frustrated ... and don't ever feel bad about it. The people around you will understand.

Don't just stay away from the chocolate. Definitely and absolutely no coffee! No caffeine at all. It dehydrates. You need as much water as you can drink. Chicken broth sounds boring and not very appetizing, but it's important that you drink it as well. Also, apple juice is extremely acidic, so no apple juice if you're nauseous. In fact, nothing acidic.

Don't feel like you have to be 'on' all the time. It takes its toll, and you need all the strength you can get. You'll figure it out for yourself, what your comfort levels are, but just try not to feel that pressure.